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life-care planning

Dealing with the Emotions of Life-Care Planning

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    By Brian LeBlanc

    I was upset. So was Maureen. I suspect a number of our care partners were, too. But the conversation needed to be had. We needed to update our life-care plan – to have the tough talk some of us desperately needed.

    The tough talk I desperately needed.

    Maureen, my life partner/care partner, does so much for me as we trek this path with Alzheimer’s and vascular dementia together. I still cling to my independence – sometimes, I admit, a bit too much – but truth be told I know the reality. I’m dependent on Maureen for a lot of things these days. She’s my everything, and I love her dearly for it. I need her here to help me through the fog most days, to coordinate my schedule and doctor appointments, to finish my sentences, to preserve my steadily fading memories.

    I just need her here. 

    I’ve grown accustomed to having her here to help me. And I know she always will be, but the more important understanding that I needed to come to was that it’s not all about me. Maureen has a life. She has her own health issues. She has a business to run and clients to see. Without having the time and space to handle her business, she won’t have the health and energy to handle our business and my business.

    So We Took Action and Adjusted Our Life-Care Plan

    We called a meeting of our care-partner team. (Luckily for us, Maureen is a professional life-care planner and Board-certified Patient Advocate, so she knows how to orchestrate all this!) 

    The goal? Have a plan in place for if Maureen can’t be there for short and prolonged periods of time. And thanks to our brilliant friend and care partner Mel Coppola, we arrived at our new 2-2-2 life-care plan. (Maureen wrote an awesome blog about this plan, and I wouldn’t dare speak for her. I know better than to poke the bear!)

    So, of course, I’m here to discuss the emotion of it all. Because that’s what I do. As much humor and lightness as I like to bring to these discussions – for the betterment of others living with Alzheimer’s disease and other types of dementia – there’s a sadder, darker perspective that always must be addressed.

    For what seems like the first time, this had nothing to do with my health struggles, my personal needs, or my mortality.

    ‘I Won’t Be Here Very Long to Help You in the End’

    How do those words taste? OK, so it’s obviously hard to remember the details. But I remember that emotion just fine. 

    The care-partner team met at our place to discuss what should happen if Maureen’s not available for two hours, two days, and two weeks. (Hence, the 2-2-2 name.) I was in the middle of my “what about me?” spiel. I couldn’t fathom it. Why wouldn’t she be available? Isn’t she always supposed to be here to help me?

    “OK, Brian, if I can’t attend to my own medical and personal needs, I won’t be here very long to help you in the end,” Maureen said.

    It hit me like a lightning bolt. If ever there was a mic drop – that was it. I was immediately disarmed. I went from being angry – and, I hate to admit, a bit selfish – to being more understanding and – if it’s even possible – more in love with her.

    How could I have been so blind? I know she doesn’t blame me. Neither do the other members of our care-partner team. When everything has been about you for so long, any person would naturally fall into that pattern.

    So with that emotional baggage out of the way, we were free to discuss what to do about it.

    The Plan: Learning To Let Go

    With the understanding that Maureen, the light of my life, has to have the time and space to be the light of her own life – to help herself and many others like me at her job –  we adjusted our life-care plan. 

    We learned way back in November that a health issue for Maureen could derail even the most professionally-crafted life-care plan. We learned that it must be flexible and factor the unexpected.

    Who will be there to sit with me for a few hours while Maureen attends to a client or steps away for her own mental health? Who steps up when she must go to the hospital for a few days or even a few weeks?

    The 2-2-2 plan, thanks to our tough discussion, now addresses all that. Care partners whose level of commitment may have changed were able to voice their new realities. Immediacy is an issue for some due to work and family responsibilities. That’s cool. Completely understandable. Now we know. 

    Someone else, a neighbor perhaps, may need to help in a pinch. We need to engage a home care or respite-care agency to manage things in a more long-term situation. And that’s fine! I’m looking forward to meeting them and us getting to know each other!

    And Now, We Move Forward With Confidence

    All of our care partners showed up for this meeting – not a single absence. It felt so good to know that our friends and loved ones care that deeply. On a personal note, it was refreshing to sit down and chat with them. It’s hard to maintain relationships when you have dementia. Lots of people stop coming around, and it gets lonely.

    But, as I always say: I may have dementia, but dementia doesn’t have me. I’m so happy we were able to get together, have some real discussion and emerge with a new life-care plan that works for everyone. 

    Peace,

    -B

    life-care plan

    Our New 2-2-2 Life-Care Plan

      By Maureen Rulison

      We’ve said for a long time now that a well-made life-care plan should be flexible. It should account for the expected – and unexpected – that comes with aging in good health and bad. It should factor the care recipient’s needs. Just as importantly, it should factor the needs of any and all care partners, because at some point we all must become recipients of compassion and care ourselves along the way.

      So Brian and I would like to introduce our new 2-2-2 life-care plan. Catchy, right? It has a little ring to it – the brainchild of our friend and care-partner team member Mel Coppola.  OK, so it’s not the entire life-care plan, but it’s an important part of our plan that mobilizes our care-partner team in case I’m not there. 

      But 2-2-2? What’s that mean? It plans for Brian’s care if I’m not able to be there as his primary care partner for two hours, two days and two weeks.

      How We Built This New Part of the Life-Care Plan

      It took a sit-down meeting of everyone involved. Yes, everyone. Everyone needs to be on the same page. So we met – the eight care partners, including close family and friends, and ourselves – at our house. We prepared a little meal and sat down for some very frank discussion about:

      • Brian’s current realities living with Alzheimer’s and vascular dementia
      • The likelihood of an emergency – medical or otherwise – affecting Brian or myself
      • Care partner time commitments and abilities to deliver care in a pinch
      • Home care and respite care alternatives

      So here’s how we framed the conversation.

      A Brief Refresher

      Everyone needs a little refresher because sometimes years can go by with no action needed. People, in general, get wrapped up in their own daily routines and responsibilities. They may gradually forget details associated with your plan.

      Even if they were a big part of crafting yours or your loved one’s life-care plan initially, it’s easy to forget who committed to what. Was “Cousin Carl” supposed to stay with Brian in a prolonged emergency, or was that “Sister Sally’s” job? Was “Neighbor Nancy” supposed to pick up groceries and prescriptions, or “Brother Bob?” 

      So it’s important to lay out the plan and reiterate responsibilities as they currently stand.

      Adjusting to New Realities

      Because years may have passed, the plan now must adjust for changing realities. Circle around the room and give everyone a chance to discuss their lives today. As you know, people get new jobs, homes and responsibilities. Kids and other family members enter or leave the picture and require their own unique styles of care. Perhaps a care partner’s child now plays on a travel baseball team, or an in-law has now moved in for full-time care themselves.

      We’re so happy we had this conversation. Even some of the most honest people might be afraid to come forward, without prompting, and say their level of commitment has changed. But if you approach it from the “no hard feelings” angle – and truly mean it – they’ll share more freely for the good of the team. 

      Two among our eight-member care-partner team noted their professional and personal responsibilities would lessen their involvement. Immediacy is now an issue for them. And that’s fine! At least we now know those critical details to plan forward.

      We’ve also had to adjust to Brian’s new realities. In recent months, Brian has had a pacemaker procedure in addition to his steadily progressing dementia. The things we knew – and thought we knew – one year, two years, five years ago are completely different. The life-care plan must change accordingly.

      Managing Emotions

      This one was particularly emotional for Brian. (He wrote some of his own thoughts on the process here.) You see, he’s not actually a selfish man, as much as he may joke. He’s a very loving man, and we love him all the more for it. But he’s admittedly grown accustomed to things being about him. And that’s no judgment – we would ALL get to that point after years of living with dementia and having our lives tailored to our medical and personal needs.

      I’ll let him speak for himself, but I believe he made some great personal strides, even for the ripe old age of 62. Because here’s the reality: I have needs, too, including running this Patient Advocacy business, attending to my own medical issues, and taking time for myself. I must leave the house often to run errands or visit a client. And everyone needs to step away to smell the roses. 

      Brian was visibly upset when we discussed the possibility of me being gone for two hours, two days or two weeks. He just doesn’t want anything to happen to me and can’t imagine me not being there to help him, however long that may be. But I told him, “OK, Brian, if I can’t attend to my own medical and personal needs, I won’t be here very long to help you in the end.” 

      The message sunk in for him, as it did for everyone else on the care-partner team. We’re all close family and friends, and we all must face the often emotional realities along the uncertain path ahead.  

      So What Was Our Conclusion Under the New 2-2-2 Life-Care Plan?

      Things needed to change. We needed to consider bringing new parties to the table to fill in gaps that have naturally emerged with time. Again, I can’t stress flexibility enough. We learned from my medical scare in December that a life-care plan must evolve and be fire-drilled for effectiveness.

      From both mine and Brian’s lived and professional perspectives, we know time is a care partner’s most precious commodity. And that’s exactly what we’re asking – time. We will engage a local home-care agency to begin scheduling regular times to visit with Brian and  getting to know each other. We will also look for friendly neighbors closeby who may help in a pinch or visit periodically.

      So 2-2-2. We planned for what would happen if I’m indisposed for two hours, two days and two weeks. We assessed current and anticipated realities for everyone involved. We shared emotions freely. And we now know who will do what and when. (This plan may very well change with time, too.)

      What does your life-care plan look like? As a professional life-care planner and a Board-certified Patient Advocate, I assist individuals and their care-partner teams every day. And then I come home to fulfill our life-care plan with my Brian. If you need help, Caregiver Support and Resources, LLC can help you to build a plan and refer you to great community care resources.

      care partner

      Inside the Mind of a Care Partner

        By Maureen Rulison

        It’s early morning. I’m up and moving quickly. Brian is still asleep. “Good,” I say quietly. “He had a rough one yesterday.” And I then remember he’s been in a brain fog for the better part of four days. That’s happening more often. At least it’s beautiful outside. He can sit out, enjoy the sun and look for the dolphins – a perk of living here! 

        We both know there’ll come a day when Brian’s Alzheimer’s disease and vascular dementia pushes him into that fog … and he’ll never come out.

        But the day presses on. As he sleeps, I’m busy coordinating his life and mine. That’s my commitment as his life partner and care partner. What are my needs? (I still work full-time in this business to benefit aging individuals and their care partners.) What are his? (He’s still working hard through his advancing dementia, giving talks and creating content for our nonprofit We Are Dementia Strong and his blog abitofbriansbrilliance.com.) 

        Work. Meals. Doctor appointments. Prescription medications. More work. More meals. More meds. And hopefully a little play and sleep mixed in somewhere. Welcome inside the mind of a devoted care partner. It’s a labor of love, and I love him all the more for it. 

        A Doctor Calls … Then Another … Then Another

        It’s one thing to follow guidance from one medical professional. It grows more complex for anyone advancing in age, even in the best health. 

        For Brian especially. He has a team of neurologists for his dementia. He has his team of cardiologists to manage his chronic heart issues. He has an endocrinologist to deal with his diabetes. And many more professionals all the way around, on top, in between, and hidden around the corner.

        Primary care physicians. Clinicians. Mental health specialists. They all work separately to treat the whole. What one does affects the other. So one calls. And sometimes another … then another … with changes in prescriptions and medical advice, some of them rubbing against the advice of another. I often lament that they don’t all just coordinate amongst themselves. Alas, here I am even as a professional patient advocate and life-care planner, learning on the fly what best works for Brian’s medical needs and seeing that they’re done.

        Coordinating Meals & Snacks

        Brian’s awake now. He’s out in the kitchen making his coffee, but in his fog that’s particularly pronounced in the morning he’s having a little trouble managing the Keurig. I remind him to use the sink’s extending hose to fill the reservoir and then press the full pot button. 

        But he needs more than coffee to get him going – and keep him going. Brian’s dementia and diabetes are in a constant battle. His brain has been gradually deteriorating for years. The brain needs blood glucose to function. His pancreas won’t let that happen naturally. 

        So what do we do? Well, we try to eat healthy – and often. In between meals, he always has a cupboard stocked full of his favorite snacks. And now, with the help of his girlfriend, Alexa, he has reminders set to check blood sugar and stop to munch on something to keep that delicate blood-sugar balance in check.

        (And in my busy professional schedule, I have to remember to eat, too! I love my quick trips to Chick-Fil-A.)

        Hours of Activity

        Brian jokes that I’m a cheetah and he’s a sloth. Even as he wakes, it sometimes takes a long time for his brain to kick into gear – and that’s becoming more and more frequent. So he may mosey over to the couch after breakfast and just sit there with his coffee and perhaps something else to munch on. 

        So often, it’s helpful to give Brian some music to enjoy as he sits and relaxes. Art and music are such powerful memory and cognition tools – capable of snapping him out of a fog more quickly and effectively than any prescription drug on the market. 

        Of course, sometimes we don’t have the luxury of waiting around. We have appointments for his (and my) medical needs. We have podcasts to record, content to write for We Are Dementia Strong, presentations to prepare, and interviews with media at all levels. Brian moves at his pace, but thankfully he has the most awe-inspiring (some may call it miraculous) ability to jump in front of a camera or microphone as if he’s back in his pre-dementia marketing days. 

        Since his successful pacemaker procedure a few months back, we’ve been able to enjoy a lot more physical activity. We like to walk a mile or more around our 55-and-older complex, which offers some awesome views of Tampa Bay. We bump into friends and neighbors also enjoying our “Senior Olympics Track,” sometimes multiple times (and Brian manages to say hi every time).

        Some days he can’t do too much. And that’s OK. We’re patient.

        Visual & Verbal Cues

        Dementia is so much more than memory loss. We say it all the time. And we also say that if you know one person with dementia, you know, well, one person with dementia. While symptoms may be similar, the distinct experience often varies from case to case, stage to stage, and diagnosis to diagnosis.

        Brian now needs reminders for lots of things. As I said, his girlfriend, Alexa, can help with some things. But most other things need a wife’s touch, thank you very much. 

        Brian and I, as cliche as it sounds, can finish each other’s sentences. I know him VERY WELL through listening and observing intently. You may notice from our videos that I often look down at the ground as he speaks. That’s because I’m listening to every word to know when to jump in when he loses a thought. I watch his body language. He rocks when he’s uncomfortable or overwhelmed, so I know when to change his environment.

        Planning for EVERYTHING

        Here’s where my professional experience comes in handy – and Brian’s lived experience. We both have great life-care plans accounting for anything that could arise, in good health and bad, from medical care to support systems to end-of-life care … and beyond. 

        For many care partners, Medicaid & VA planning with asset protection plays an important financial role. When the time comes as it does in most cases for greater levels of professional care, being ready to cover its immense costs is critical. 

        Although we’re prepared in this house, I still think about all of this daily because life throws so many curveballs. You know what they say about the best-laid plans. But having something in writing – something that can evolve with change – is better than nothing at all.

        We’re Here to Help!

        Caregiver Support and Resources and #WeAreDementiaStrong are here to serve our friends in need. Since beginning this quest in 2014 to educate wide audiences about the realities of care and support, we’ve realized one important thing: we’re stronger together.

        As always, feel free to contact me at maureen@caregiversupportandresources.com if you have any questions!

        care-partner team

        Who Should Be On Our Care-Partner Team?

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          This may just be one of my favorite parts of the life-care planning process: building the care-partner team. You naturally have tons of questions as you and/or a loved one make important preparations. Yes, they’re all equally important! But selecting the care partners that’ll be there for support in good times and bad is the foundation on which a life worth living is built.

          What’s a care-partner team? Admittedly, the common vernacular out there today usually favors the term “caregiver(s).” However, most professional circles involved in care for aging and life’s late stages now prefer person-centered care and language. “Care partner” empowers and uplifts both the individual(s) at the center of care and their beloved helpers.

          So let’s build that vital network of support. It’s a team effort. Success, health and happiness requires everyone doing their part. 

          Building a Care-Partner Team: Who Should We Include?

          The great thing is there’s no wrong answer. No one says your spouse has to be a primary care partner – if that’s your choice. No one says your care-partner team must include children or any other close family – if that’s your choice. It certainly can include them – if that’s your choice. And there are a host of other professionals and agencies that may help the team – if that’s your choice.

          I am a primary care partner to my life partner, Brian LeBlanc, who lives with Alzheimer’s disease and vascular dementia. That means I’m present in his life daily to offer assistance any way I can. Admittedly, it works out well because I’m a professional life-care planner and Board-certified patient advocate. (But here’s a little secret: you don’t need to be a professional to be an expert care partner guided by love.)

          So let’s build your team today.

          Circles of Support

          Think of a care-partner team as a series of concentric circles. Your loved one sits at the center. They receive care, of course, but under the person-focused care philosophy they’re actually tackling the most important job of directing it. Everyone else surrounding them plays vital and specific roles – non-professional and otherwise – either directly providing love and support or offering guidance. And as an added bonus, everyone on the team both gives and receives care. 

          The First Circle

          Surrounding your loved one(s) may include family, friends, neighbors and other good people who hold a special place in their heart. Makes sense, right? They’re typically quite close. They may visit frequently or even live in the same residence. So on a day-to-day basis, care-partner tasks may look like business as usual. A spouse may organize medications, plan meals and shop for groceries. A sister may clean and do other household chores. A nephew may walk the dog, balance the checkbook or simply visit for coffee.

          Who these people are and the depth of their responsibilities is up to you. It’s helpful to identify a family lead person (FLP), someone with close proximity, availability and a strong familiarity with their daily needs, wants and routines. 

          A beloved spouse may desire to see their love and devotion through “’Til death do us part.” But poor health and death comes earlier for some than others. An adult child or sibling may assume a lead role, but there’s no hard-and-fast rule saying the FLP has to actually be family. A neighbor or longtime friend – or even someone they happened to “click with” in the park a few months back – could head the care-partner team.

          What else to look for in the first-circle team members? Dependability and accountability. The care-partner team is also there to support the primary care partner. Sure, you’ll seek those with the warmest, most personal relationships. But that alone doesn’t make a great care partner. Even the kindest people may not be ready or available to assist the care required. 

          Deeply connected family members can also lack the mental toughness, unbiased lens, personal health, self-awareness and/or financial freedom to serve lead roles. That doesn’t mean they’re useless to the team and individual. They may simply have to take another supporting role in the best interest of your loved one(s).  

          Think positive energy and responsibility.

          The Second Circle

          A well-made life-care plan should next factor community professionals, agencies and support systems. Effective care takes a village, whether an individual lives with a terminal illness or is aging in good health.

          The first options are obvious. Most folks have a primary care physician. Getting up in age, most continue to collect more doctors, clinicians and other specialists who help with distinct conditions. You know the types: heart doctors, neurologists, oncologists and endocrinologists to name a few. Their titles and expertise are ever complex. (Say otolaryngologist 10 times fast! I’d rather just say “ear, nose and throat doctor.”) 

          But there’s more to aging – and certainly more to terminal illness – than just the specialists that help medical care. You should also be considering end-of-life care options, like hospice and/or palliative care, because the dying process truly demands comfort and resources. And then there are financial and legal preparations, because we must be ready to guide the distribution of assets and the execution of final wishes. 

          But wait! There’s more! 

          Your loved one may require living transition and placement services to accommodate home health care or move to assisted-living, skilled nursing, rehabilitation, memory care or other senior-living services. Planned or not, these are often vital to maintaining a life worth living and quality of care as health conditions worsen.

          They may need real estate assistance to sell and buy property meeting specific needs. Their needs may include more personal care preferences for:

          • Religious services/spiritual counseling
          • Respite care/adult daycare
          • Medicaid/VA planning
          • Home care
          • Comfort care
          • Domestic services (housekeeping, meal delivery and cooking, etc.)
          • A death doula 

          An experienced Board-certified patient advocate and life-care planner can coordinate and refer all personal and professional services requested on the care-partner team.

          A Board-Certified Patient Advocate Coordinates the Whole Care-Partner Team

          Care partners come in all forms. They’re family. They’re friends. They’re professionals. They each serve an important role in a life worth living. Some services may not be required for years, but you should organize resources early for when it’s time to mobilize.

          I assist individuals and their care-partner teams every day. And then I come home to fulfill our life-care plan with my life partner/care partner, Brian. If you need help, Caregiver Support and Resources, LLC can help you from beginning to end.

          person-centered care

          5 Ways Person-Centered Care Improves Health & Happiness

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            It really grinds Brian’s gears. I’m not kidding. Being labeled an Alzheimer’s “sufferer,” or “disabled,” or even somebody’s “patient” makes my life partner/care partner so angry. It’s easy to understand why. We prefer person-centered care and language because anything else automatically places the individual at a disadvantage.

            A disadvantage? How?

            Let’s say your mother lives with dementia. Her condition has worsened the last six months, so she agreed to mobilize part of her life-care plan to move to a memory care home in your community. “It’s for the best,” she says in one of her more lucid moments.

            But you begin to hear some things you don’t like. The doctor on staff isn’t listening to her concerns about a certain medication. The nurses don’t call your mother by her first name, Beth, instead referring to her as “the Lewy-body dementia in 26A.” 

            “The doctor still has her taking that medicine? It’s only making her worse,” you complain to the administrator. “And she’s not even being labeled as a person anymore? She’s Beth, and she’s a person first!” As Brian always always says, “I may have Alzheimer’s, but Alzheimer’s does not have me.” But person-centered care and language isn’t only for persons living with dementia. Any individual – whether living with a terminal illness or aging in good health – can have better health and happiness with some careful attention to how realities are discussed and care decisions made.

            The Benefits of Person-Centered Care & Language

            Person-centered care (also called person-focused or person-directed care) empowers the individual at the center of care. Health care systems for years had a top-down approach. There was a health professional in charge of decision-making in what was supposed to be a patient’s best interest. 

            People only received care. People were caregivers. Our loved ones were defined by their diagnoses and medical needs. Intended or not, such thinking gave power over the individual in both word and deed.

            Philosophies then began to change – for the better. Why shouldn’t a person direct their own care? (They know their bodies best, after all.) Why should someone be called a caregiver? (More accurately, they’re partnering in and assisting with a loved one’s care.) Words and care models matter, and our good friends at the Pioneer Network and Eden Alternative have led these culture-change efforts for decades. 

            Here’s an easy breakdown of how person-focused care and language works.

            1. Speaking the Language of Compassion

            Words are our most powerful weapons. Their very presence can hurt or heal – your choice. Person-focused language is one of compassion. It prefers “care partner” to “caregiver,” “resident” to “patient,” “person with different abilities” to “disabled,” and so much more.

            As you can see, it removes labels and focuses on the strengths individuals do have rather than weaknesses. To Brian’s point, he’s not a “sufferer of Alzheimer’s and vascular dementia.” He may struggle, but he’s not defined by that struggle. He’s Brian, and he’s defined by his life – everything he’s done, victories and defeats, love and loss, family and friends. Likewise, your loved one is entitled to care verbiage that honors their humanity and spirit. 

            Even the places they receive care are subject to person-centered language. “Facility” is such a common term. But the Eden Alternative asks, “Why are we still dropping the F-bomb?” Wouldn’t you feel more happy, comfortable and ready to heal at “home”?

            2. Giving the Individual a Voice

            Medical professionals used to enter a room, make an analysis and render a treatment decision. It was to be followed to the letter. We get it, most medical professionals and teams have years – even decades – of schooling and experience. But what of the individual who lives in that body, knows how it feels and reacts, and the loved ones who also know them best? 

            Person-centered care philosophies now understand individuals and their loved ones are the most under-utilized of all health resources. We now have a voice and a choice to help inform the care that’s delivered. If a certain medication or treatment doesn’t work or is too painful, that’s taken into consideration as something to avoid and not simply as a negative side effect.

            Sometimes individuals prefer a care routine – a daily regimen of specified care and activities. Others enjoy more latitude to see what each day brings. And with some great life-care planning, person-centered care can give a voice even when the individual can no longer speak for themselves.

            3. Involving Loved Ones

            We mentioned family and other close loved ones. They know the individual best. They’ve seen the progression of the person’s natural aging or disease, first-hand, sometimes every day for many years. They’ve seen treatments fail or work perfectly. And when a loved one has lost the capacity to advocate for their own needs, family members and close friends are the only ones left to help make decisions.

            But it’s not just about care decisions. (Helpful hint: hopefully your loved one has a living will or advance directive to honor wishes.) Sometimes improved health and happiness comes from just having loved ones involved on a regular basis. Seeing a beloved husband, wife, grandson or even favorite neighbor regularly quells feelings of loneliness, helplessness and boredom.

            4. Seeking Alternative Approaches

            Health care is now a realm of education, consultation and delivery. Person-centered care allows us to hear options and discuss which may be the right approach. When one door closes, it’s on health professionals to uncover alternatives that may be seen as safer and more effective. 

            Advances in medical knowledge and technology have virtually eliminated one-size-fits-all care approaches. What works for one may not work for another. No one dictates care beyond the care recipient. 

            5. Changing Perceptions

            Culture and media have framed many of our perceptions of aging and illness. As you know, these realities are increasingly portrayed as “ugly,” “weak” and “undesirable.” Person-focused care and language counter those attitudes as utter nonsense. Beauty and strength are found in all ages and ability levels. No one’s “ugly” because they’re advancing in years. No one’s “weak” because they’re affected by an illness they didn’t choose.

            And as an added bonus, these philosophies also improve health provider outlook. A positive outlook to daily care always leads to less job burnout, greater job satisfaction and lower turnover rates. 

            Let’s Build a Plan for Person-Centered Care

            Every person has intrinsic value, dignity and character. Person-focused care and language honors each of these – and more. 

            Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning, including Board-certified Patient Advocacy, Medicaid Planning & Asset Protection, Referral Services and #WeAreDementiaStrong. We’re happy to guide the process in a caring and compassionate way.

            life-care plan

            9 Parts of a Great Life-Care Plan

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              Planning dominates our lives. That’s a good thing. We plan our careers and retirement. We plan our kids’ upbringing and education. We plan our weekly grocery list. We plan the family trip to Disney World. But, regrettably, most people think about building a great life-care plan too late or not at all.

              So what’s a life-care plan? It could be one of the most vital plans you ever make. Not that those mentioned (and countless others) aren’t important. But planning for later in life – for good times and bad; in sickness and in health – puts affairs in order and honors your loved one’s needs and wishes.

              We build plans that ensure your loved one maintains control or keeps the decision-making as close as possible. We emphasize being loved; meeting all care needs; having financial security; and creating a life of joy, happiness and comfort until the end … and beyond.

              What Should a Life-Care Plan Include?

              A well-made life-care plan should include these 9 basic (and not-so-basic) elements. It’s a formal document that breaks down what will be done, when, why and by whom. It factors everything that needs to happen for your loved one as they navigate the uncertainties of advancing years, health conditions, financial and legal realities, and end of life. 

              Sounds authoritarian, right? “Do this.” “Do that.” “Don’t do that.” Not exactly. It should be flexible. It should anticipate changing realities, needs and wants over time. Care partners and responsibilities may change. Unanticipated medical diagnoses may arise. Even fortunes can reverse almost overnight.

              So let’s build a foundation on these life-care planning principles and leave enough wiggle room for details to change later. 

              1. Person-Centered Language & Care

              Let’s begin here because words alone can help – or hurt. The language of your life-care plan must be what we call “person-centered” or “person-focused.” Words can empower the care recipient or relegate them to a weakened position of vulnerability and helplessness. 

              Don’t believe me? Check it out:

              • Caregiver vs. care partner – Caregiver assigns a position of authority over the individual’s care. Care partner levels the playing field, allowing the individual at the center of care to advocate for their needs and wants as an equal.
              • “Alzheimer’s in 34F” vs. Melissa – Professional care staff have too long referred to individuals by their diagnoses instead of their actual names. But she’s (insert name here) and is a person with a story beyond her medical condition.
              • Patient vs. resident – Another identification misnomer. The word “patient” carries a helpless connotation of someone dependent on a facility or another person for care. A resident simply lives in a location and directs their own care from that “home,” wherever it may be. 

              You see, it’s more than just a positive outlook or worldview. Words alone support a more effective and fulfilling person-centered care structure. Person-centered care values the individual as a full and capable member of society, honors their perspective and wishes, evolves alongside changing needs, and supports a life worth living.

              2. Care-Partner Team

              We build care-partner teams to include individuals chosen by your loved one. Members may consist of family, friends and professionals. The partnership is characterized by mutual cooperation and joint responsibilities. There are opportunities to give (and receive) care by all parties in this partnership:

              • An adult child may pay your loved one’s bills and balance the checkbook.
              • A neighbor may stop by periodically with meals.
              • A brother or sister may assist with bathing and medications.

              Your care-partner team may also include both traditional and non-traditional care methods. Some families prefer support in accordance with religion and faith, with a clergy member, lay leader or other religious/spiritual adviser serving a central role. 

              3. Patient Advocacy

              Moving ahead with the life-care plan, patient advocacy is your one-stop shop for EVERYTHING your loved one and care partners need. As a Board-certified Patient Advocate in the State of Florida, I work with care-partner teams to advise and coordinate resources needed for every step of the care journey. 

              Our loved ones face many important decisions. You need an experienced patient advocate who knows each required step for your loved one’s physical, emotional and financial well-being. 

              (Which segues nicely to our next points.) 

              4. Medical Needs

              Good health is a luxury. Some of us are very fortunate. Our loved ones may be in very good health well into their 80s or 90s, only to experience a quick-and-unexpected, life-threatening emergency. They may be diagnosed early with a terminal illness like Alzheimer’s or another type of dementia that for years deteriorates memories and cognitive abilities before your very eyes.

              No matter your loved one’s health, we must hope for the best and plan for the worst. Your life-care plan should factor anticipated health and dietary needs in both good and poor health.

              5. Financial & Legal Needs

              And then we must anticipate who will make legal and financial decisions if your loved one becomes incapacitated. Ideally, they will plan early to have official documentation prepared for “when the time comes.” It’s more than “who gets what” or who “chooses to pull the plug.”

              Needs may include:

              Get it in writing! Get it done early, when everyone has a cool head about the future.

              6. Living Situations

              OK, so we all want to age gracefully at home – at least as long as possible. But quite often, medical (and sometimes financial) realities compel us to perhaps downsize to a more manageable home or enter assisted living.

              A strong life-care plan spells out where your loved one will reside, when and why. It should have a Plan A and as many contingencies as necessary to factor both anticipated and unforeseen variables. For instance, Plan A may be that your mother and father live at home, but Plan B might include options for Mom entering a specific memory-care facility if/when her dementia takes a turn, while Plan C mobilizes home-care resources for Dad remaining at home before moving to join her in Plan Z.

              7. Community Resources

              Great care sometimes takes a village. While care begins at home, our home communities often can support our care needs in more ways than one. Community care options, including professional agencies, may perform a variety of services including 

              As part of our patient advocacy and life-care planning, we provide referrals to great resources in the Tampa and Clearwater, FL areas to relieve burdens on stressed families.

              8. End-of-Life Care

              It’s a certainty. We all face a date with the end. And while some of us will be lucky enough to pass in peace, the reality is that death for most people can be a lengthy, uncomfortable process. Even if your loved one is healthy, their body will likely shut down in the end stages. They’ll lose appetite and weight and the organs will begin to shut down – sometimes quite painfully.

              That’s why hospice care is a great resource for individuals expected to live six months or less, providing comfort and support at end of life. For those expected to live a bit longer in a debilitating condition, palliative care provides many of the same comfort services. 

              9. After Care

              And then it’s all over. Whether your loved one passed expectedly in peace and dignity or if they struggled mightily, the death experience can be jarring for everyone involved. Close family and friends understandably feel emptiness and sorrow. Sometimes only counseling can work through such strong emotions.

              But there are often other pressing matters including memorial services and other final arrangements, as well as financial and legal responsibilities to fulfill. Alongside our community partners, we provide direct after-care support and referrals for whatever you may need. 

              Let’s Build a Life-Care Plan for a Life Worth Living

              As a professional life-care planner and a Board-certified Patient Advocate, I assist individuals and their care-partner teams every day. And then I come home to fulfill our life-care plan with my life partner/care partner, Brian. If you need help, Caregiver Support and Resources, LLC can help you from beginning to end.

              life-care plan

              A Life-Care Plan Must Be Flexible

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                Last week we discussed fire-drilling your life-care plan. For myself and my care partner, Brian, a nightmarish “perfect storm” had thrown our professionally designed plan (built by me) into disarray. It called a number of factors into question and shed light on one key reality: a life-care plan must be flexible.

                Not that ours wasn’t. But it clearly wasn’t flexible enough. It didn’t factor enough of the what-ifs, whoopsies and oh-shoots. Thankfully, we ended up OK. 

                And in the end, I was actually happy that our pain served as a teachable moment and example for the many good folks out there (like you and your loved ones) who need a strong and comprehensive life-care plan in later years.

                A Life-Care Plan is a Living, Breathing Document

                So, first of all, yes, it’s a formal document that breaks down what will be done, when, why and by whom. It factors everything that needs to happen as one navigates toward life’s logical conclusion – in sickness, good health, terminal illness and everything in between. Elements often include:

                Sounds rigid and strict, right? Not at all. It may include considerations that are non-negotiable – a certain type of memorial service, including (or not including) hospice, medical and dietary needs, and even musical preferences. But they’re not set in stone.

                Needs Change as Time Marches On

                Things change with time. Does that mean we stop planning? Does that mean it’s pointless to plan knowing the world will throw wrenches and curveballs? No! If anything, it means we try harder to prepare and factor all the possible scenarios.   

                We look to the future with lessons from the past while adjusting to needs today.

                Supporting Roles

                OK, so in our “perfect storm” a few weeks back, the issue was that I was very sick and needed hospitalization. Our planned care partners who would step in for Brian, who lives with Alzheimer’s and vascular dementia, were unavailable (take note: a VERY COMMON occurrence during the holidays).

                But what if I were gone forever? What if you, a brother, a spouse, a dear friend tasked with primary care-partnering duties were gone? Brian and I discuss this frequently. We’re getting older (but not that old, so be careful!). And for all the attention Brian allows for his medical, emotional and psychological realities for dementia awareness and advocacy, my own lesser-publicized medical needs do exist. I’m a human being, no less mortal than any other. 

                There’s even a very real possibility Brian may outlive me. Our life-care plan factors that. Brian has even compiled a video to his future care partners to know him as a person, as well as his needs and wants, if I’m not there.

                Yes, our life-care plan still names me as a primary care partner – and spells out the roles I must serve for him, he for me, and us for each other. But it also names the appropriate people and professional services that would step in if I die or am incapacitated myself.

                Medical Needs

                Let’s say your parents are compiling a life-care plan in their early 50s. Good for them!

                They’re in good health, still working, and retirement remains distant. But (I’ve seen this a lot before) the plan they’re building anticipates great health all the way to the grave.

                • “Should you have plans for hospice?” “Nope, I’m sure we’ll age and die gracefully and painlessly.”
                • “Are there certain medications you’re against taking?” “I don’t think we’ll have to worry about that.”
                • “Who will make care decisions if you can’t speak for yourself?” “Ehh, my wife will always be there to set ‘em straight.”

                Wishful thinking, at best. Naiveté, at worst. Then comes a diagnosis of Alzheimer’s, cancer, organ failure or something else debilitating and/or terminal. Without planning, you and yours may end up suffering from medical indecision and confusion, financial and legal issues, and poor care outcomes. 

                At 53 you may still be athletic and spry, playing golf, tennis or even basketball regularly. At 76 your knees likely won’t handle it. By 83 the pain could be worse than you ever imagined. And that’s in good health. 

                Imagine it worse. Imagine it possible. And then build the support and resources required to meet those needs – medical, financial and more – into your life-care plan. (Helpful hint: Certainly prepare for and expect the absolute best. Just be prepared for when life is unfair. Your loved one may want those meds after all.)

                Helpful Resources

                Who would’ve ever expected we’d be living in a Covid hell? Who would’ve anticipated a third year of it? It’s caused so much anger and confusion over close family members – many of whom are primary care partners – visiting and helping their aging relatives. I spent a ton of time teaching families to use Zoom or Facetime just to see their loved ones. 

                For anyone who made a life-care plan before 2020, Covid was not part of it. Now we know and we’re better for it – anticipating Covid may continue indefinitely or the legit possibility of another pandemic in our global society.

                Now we have a nationwide movement to ensure one close family member or friend would be considered an “essential worker” to have direct access to an individual under quarantine mandates – “because isolation kills, too.” Here it’s called Florida Caregivers for Compromise.

                We also highly recommend community support groups. That’s your best front line for learning available resources and how others in similar circumstances have met their needs. You’ll meet those experiencing similar realities as you. (But a word of caution: a care partner to a spouse feels emotions and realities far different from one to a parent, sibling or other close family. Each emotional experience is distinct.) 

                Additionally, here in Pinellas and Pasco counties, we have severe acts of nature that could up-end any solid life-care plan. There are so many elders with limited mobility or mental capacities living in high-rise apartments. Their own homes could become death traps during a prolonged power outage due to a hurricane or tropical storm, when elevator use or care-partner access would be impossible. You may register with Emergency Services to ensure yours or your loved one’s unit is checked and cleared during a weather evacuation, fire or other emergency.

                Expect the Unexpected in Your Life-Care Plan

                I am a Board-certified Patient Advocate in the State of Florida. I work with care-partner teams to advise and coordinate resources needed for every step of the care journey. These plans may be specific, but they also require flexibility.

                Aging individuals and their care partners face important decisions. There are many moving parts to planning care for quality of life and financial protection. You need an expert Patient Advocate who knows each required step for your loved one’s all-around well-being.

                Contact me at info@caregiversupportandresources.com to get started today.

                life-care plan

                Fire Drill! Is Your Life-Care Plan Ready for the Unexpected?

                , , , ,

                  I’m a professional life-care planner. I’ve been helping people and their loved ones plan for advancing age and terminal illnesses for decades. It’s critical to be prepared. Just a few short weeks ago, our own plan fell apart.

                  It certainly wasn’t for a lack of trying or expertise. By all accounts, the life-care plan Brian (my life partner/care partner) and I have built together was rock solid. It factors all eventualities from finances to his dementia-related needs to both of our final wishes.

                  But I was deathly ill with pneumonia. Brian needed help that could not be found. I’d hate to consider the worst-case scenario. What horrors could befall us with me dead or incapacitated in the hospital and the love of my life on his own for God knows how long?

                  It happened to us — professionals who make a living by building life-care plans and related disciplines. It could happen to you. So this got me thinking. You must fire drill your plan.

                  Your Life-Care Plan Shouldn’t Be Left to Chance. Test It Out!

                  Yours or your loved one’s plan could be simple or dramatically complex. You or your loved one may be in good health, with only very basic measures to ensure financial affairs are in order and end-of-life care is prepared. Or you may anticipate poor health and many logistical layers needed to deliver appropriate care (for everyone involved).

                  In either case, and anything in between, let’s test out the life-care plan.

                  Care-Partner Support & Responsibilities

                  This part sticks out, first and foremost, because it was what caused the most uncertainty and fear. I was ill. Brian lives with Alzheimer’s disease and vascular dementia. A brief hospital stay likely wouldn’t be an issue. He’s cognizant enough to care for himself and set reminders to complete daily tasks on foggy days. But a lengthy stay … he would need some assistance.

                  Which is where other members of the care-partner team come in to save the day, right? Yes, in theory. But in our case, through no fault of their own, family and friends were out of town or unavailable. This is especially common during the holidays, when both primary and secondary care partners may be understandably busy with other trips and engagements. 

                  These responsibilities don’t involve only those who will be called upon to “sit” for a loved one or dependent. Care-partner support may cover any need (again, for everyone involved). For example:

                  • A neighbor may agree to provide transportation to doctor appointments, in a pinch.
                  • An adult child may help with bathing, cooking and cleaning.
                  • A spouse may organize daily prescriptions and other medical recommendations.
                  • A sibling may help with yard work and other household chores during prolonged facility stays.
                  • A cousin with financial expertise may be entrusted to pay bills when you or a loved one are unavailable/incapacitated.
                  • A grandchild may stop by for visits (wellness checks) when you’re away from home.

                  No role is too big or too small. Each person on the care-partner team has something important to do. But let’s test for hiccups and other surprises.

                  How to Test the Plan

                  As I said before, it was no one’s fault that they weren’t available in our recent crisis. We had family members, other loved ones and friends in other states. Some wouldn’t be able to help due to Covid. How were they to know amidst their busy lives and other primary responsibilities? It was “the perfect storm.”

                  So how do you test your plan? Game a scenario. Don’t tell them it’s a fire drill until afterward. 

                  Without causing alarm, call a primary care partner with a task. “I’m heading out of town for an emergency meeting. Could you please come help out with Mom?”

                  Call another supporting care partner. “Hey, are you available to help Dad with the yardwork this weekend? We’ll be away getting some tests.” Or perhaps, “Could you please help with bathing and getting Greg to bed tonight? Work called, and I won’t be able to.” 

                  Are the people you’re counting on available when needed? How quickly could they get there? Would there be a wait until they arrive? If so, is it manageable? Were their reasons valid? Did they answer at all?

                  You could even gather the entire care-partner team for a military-style drill in which everyone acts out an emergency scenario. Pretend your loved one had a significant emergency and the team must take action:

                  Running through the plan — even if it’s just verbally — reaffirms responsibilities for each person involved. Like anything in life, practice makes perfect.

                  How to Adjust the Plan

                  It should be immediately clear who’s willing and available in a pinch. It should be known who’s ready and capable to accept certain responsibilities. But, most importantly, fire drilling the life-care plan may identify uncertainties that can be easily fixed with alternatives. Essentially, “If Aunt Betty isn’t available, who’s the next best option?” And, “If the next best option isn’t available, then who next?” 

                  Sometimes the best choice may not even be family, friends or neighbors. You may have to include community agencies in the contingency plans. Resources like home care, adult daycare, respite care and assisted living can provide guidance, structure and lodging, when needed. Of course, not everyone could afford hourly rates for certain services or would be eligible for Medicaid to cover them.

                  You may even run across a situation in which your loved one refuses care or assistance in an emergency. If it’s a matter of life and death — as our situation was — sometimes the best a care partner can do is call adult protective services. 

                  Testing Your Life-Care Plan Gives Peace of Mind

                  Although I was very sick, I’m GLAD the plan fell through. It was very eye-opening and allowed me to factor uncertain scenarios for the future.

                  As a professional life-care planner and a Board-certified Patient Advocate, I assist individuals and their care-partner teams every day. And then I come home to fulfill our life-care plan with my Brian. If you need help, Caregiver Support and Resources, LLC can help you to build a plan and refer you to great community care resources.

                  Patient Advocacy

                  Patient Advocacy: Your One-Stop Shop for a Life Worth Living

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                    As your loved one ages or progresses through a terminal illness, the number of professionals and agencies involved in their care will only increase. Patient advocacy is your one-stop shop for EVERYTHING your loved one and their care partners will need.

                    You’ll have doctor appointments — sometimes many of them spanning a range of health disciplines. You’ll have coordination along the continuum of care — from the home and in the community to potential long-term care options. You’ll have financial and legal considerations. And, all the while, you’ll require continuing education into health conditions, care options and quality-of-life factors.

                    After all, each of us deserves a life worth living, right? Here’s how a Board-certified Patient Advocate can help.

                    Board-Certified Patient Advocacy in the Tampa Bay Area

                    A Patient Advocate helps to navigate complex health care systems, financial realities and resources for senior care, people at end of life, and those who simply wish to prepare for life’s latter stages.

                    Care-Partner Team Building

                    We steer clear of the term caregiver. While accurate in some cases, person-centered language prefers the term care partner. Why? Because it empowers the individual at the center of care. They’re not just care recipients. They’re people — with special needs and desires for a life well lived and thoroughly enjoyed. In many cases, they may direct their own care for many years into advancing age or a terminal diagnosis. And with a great life-care plan, they may make preparations and continue to direct their own care when they’re no longer able to make decisions.

                    Where do we start? Let’s consider ALL of the individuals who may serve a role in assisting care. It’s a team effort, when possible, and this team may include loved ones, friends, neighbors and professionals with important roles in the home (family visits, cooking, cleaning, etc.) to transportation (to and from medical appointments) to respite care, assisted living or long-term nursing care (transitions and ongoing support).

                    A life-care plan is a working document that can always change as needs evolve. It provides accurate and timely information that addresses all aspects of care from physical therapy, doctor visits and crisis intervention to financial responsibilities, dietary needs and community living.    

                    Medical Care Coordination

                    Patient advocacy helps clients understand all treatment options, whether they’re terminal illnesses like dementia and cancer or simpler needs that follow the healthy aging process. Treatment options are just that: options. Sometimes seeking second (and even third) opinions yields the best possible care. We empower care-partner teams to ask tough questions of the right professionals involved in all aspects of care.

                    Some individuals see a network of doctors, clinicians, specialists and other providers to address specific needs. Complexity and confusion are common. We work alongside clients to secure care options in any setting. We will even coordinate and attend medical appointments, if appropriate. We also help care-partner teams to organize important health care, financial and legal documents (like a living will or power of attorney), as well as prescriptions and recommendations by health professionals.

                    Medicaid & VA Planning

                    A semi-private nursing home room costs on average $9,946 per month here in the Tampa, FL area. Folks can save their entire lives and think that they’ll have adequate funds for “that rainy day” only to suffer a stroke, major heart attack, or receive a terminal diagnosis. Almost overnight, they no longer have the means to afford critical health care needs. This expense would cause most people to enter financial hardship.

                    In order to receive Medicaid and VA benefits, individuals must first be financially eligible. A Board-certified Patient Advocate, like myself, helps clients to understand financial eligibility ins and outs to protect assets for now and the future. Medicaid, unlike Medicare, will cover all long-term care costs. Once we obtain Medicaid eligibility for an individual, if they remain within the Medicaid guidelines, they will be eligible for the rest of their lives.

                    Life Transitions

                    Almost everyone prefers to age comfortably at home. Sometimes that’s possible. But conditions and diagnoses come that, at times, compel transitions to a more optimal, healthy and safe living space. Moving to an assisted-living facility, nursing home or hospice end-of-life care is difficult for everyone involved.

                    An experienced Patient Advocate assists care-partner teams with the logistics and red tape associated with moving. In addition to financial eligibility requirements, elders and their care partners must navigate issues associated with real estate transactions, asset management and continuity of care. 

                    Some moves are temporary. When a client is discharged to a rehab facility (or back home), we plan and coordinate resources for whatever that next step may be.

                    Education and Referrals

                    Whether you or a loved one are researching care and financial options for years in the future or immediately after an Alzheimer’s diagnosis, your Patient Advocate will always educate you about processes, responsibilities and treatment options. 

                    There’s so much to know. Yes, it will likely seem overwhelming. What can you do when a loved one no longer responds to treatment? How do you adjust when they wish to adjust their end-of-life plans or when circumstances change for Medicaid eligibility? When those questions (and others) arise, we will refer helpful resources from a network of partnering organizations.

                    Let’s Start Planning for Patient Advocacy Today

                    I am a Board-certified Patient Advocate in the State of Florida. I work with care-partner teams to advise and coordinate resources needed for every step of the care journey.

                    Aging individuals and their care partners face important decisions. There are many moving parts to planning care for quality of life and financial protection. You need an expert Patient Advocate who knows each required step for your loved one’s all-around well-being.

                    Contact me at info@caregiversupportandresources.com to get started today.

                    Medicaid eligibility

                    Medicaid Eligibility: What is the Community Spouse Resource Allowance?

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                      Mom and Dad still live in their home. They’re advancing in age, to put it lightly, but luckily they’ve been otherwise healthy … until recently. Your mother’s health has taken a turn for the worse in the last year, and it’s clear the care required will soon be beyond the family’s capacity. Medicaid eligibility will cover long-term care at home or in a facility, regardless if she’s received a diagnosis of dementia, a terminal illness or if her health is merely slipping with age. 

                      Married couples with one healthy spouse not currently requiring coverage can still qualify for Medicaid under certain income and asset thresholds. But the Community Spouse Resource Allowance (CSRA) allows the non-applicant spouse to retain enough resources to live comfortably.

                      Understanding Florida Medicaid Eligibility Rules for Spouses

                      So what’s with all these terms? What in the heck is a “community spouse?” Sounds icky, like having to share your beloved husband or wife. Relax. It’s just the term for the non-applicant spouse, who remains in the community — aka the “healthy” or “well” spouse. The term “institutionalized spouse” is a bit of a misnomer because this spouse — the applicant — may never be “institutionalized” at all and may, in fact, receive benefits covering both home and community care options. “Resources” are most often referred to simply as assets. (Don’t mind me rolling my eyes at the needless silliness and confusion associated with this otherwise helpful program.) 

                      Medicaid helps individuals and families with limited means to afford astronomical long-term care costs. But first it ensures those with sufficient assets and/or income haven’t artificially deflated their net worth to achieve eligibility for assistance. While income and assets above limits must be spent down or distributed legally and ethically, Medicaid in most states does allow families to keep “resources” for living expenses.

                      The Community Spouse Resource Allowance is one of those measures.

                      So What Does the CSRA Do?

                      Medicaid understands its role serving individuals and families with little income and assets. They always verify those served actually meet those qualifications through financial/asset disclosures and a very thorough 5-year lookback process. But they won’t leave a non-applicant spouse (“community spouse”) with little to no money to live independently.

                      The Community Spouse Resource Allowance (CSRA) allows the non-applicant to retain assets up to a certain amount. Here in beautiful Florida — a 100% state — that maximum figure in 2021 was $130,380. The applicant spouse could keep $2,000. 

                      The federal program is administered by the states, ultimately leaving maximum and minimum income and asset limits for Medicaid eligibility up to the states’ discretion. In 100% states like ours, non-applicant spouses are entitled to all of their joint assets up to the maximum resource allowance.

                      Some examples specific to Florida: 

                      • The married couple has $350,000 in assets. The non-applicant (“community spouse”) may retain $130,380 of that sum. The applicant may retain $2,000, leaving $217,620 that must be spent down or given to family, friends and/or trustees.
                      • The married couple has $97,000 in assets. The non-applicant may retain the entirety of that sum, as it is under Florida’s maximum CSRA.

                      Spending down or distributing any remaining assets, if necessary, should be done before the Medicaid 5-year lookback to avoid an ineligibility penalty period.

                      Do All Assets Count?

                      No. The Medicaid-eligibility process and its Community Spouse Resource Allowance lump assets into countable (non-exempt) assets and non-countable (exempt) assets. 

                      Countable assets include items with easily calculated monetary value with no daily-living or sentimental worth:

                      • Cash
                      • Stocks, bonds and other investment portfolio elements
                      • Non-residential properties

                      Non-countable assets include items that would have value for daily living or sentimentality:

                      • Primary residential property, including furniture and appliances (if the non-applicant spouse lives there)
                      • A primary-use vehicle
                      • Clothing
                      • Irrevocable funeral and burial trusts
                      • Life insurance policies (typically up to $1,500 in value)

                      It’s easily understood when you breakdown the nature of each type of asset and its importance to daily life.

                      Is There a Spouse Monthly Income Limit?

                      Yes. The Minimum Monthly Maintenance Needs Allowance (MMMNA) for Long-Term Care Medicaid allows non-applicant spouses with little (or no) steady income to take some (or all) of the applicant spouse’s income for living expenses. Here in Florida (and 47 other states) the MMMNA in 2021 was $2,177.50 per month. The maximum in 2021 was approximately $3,260 per month.

                      The MMMNA essentially ensures that the non-applicant has enough regular income to survive, if they don’t make enough on their own. It, too, is based on an easily understood formula in alignment with the Federal Poverty Level. Some examples:

                      • A retired, non-applicant husband has a monthly income of just $1,750 via Social Security. Based on 2021 figures, he was eligible to transfer the difference — $427.50 — of the applicant spouse’s monthly income.
                      • A working, non-applicant wife has a monthly income of $2,200 between part-time employment and Social Security. She was over the minimum and ineligible to transfer income.

                      What Happens When Both Spouses Apply?

                      Medicaid eligibility gets a lot easier when both spouses apply. Both spouses need long-term care, therefore both must have income and assets at or below limits. The CSRA and MMMNA go away, as they are no longer needed.

                      Care for both Institutional/Nursing Home Medicaid and Home and Community-Based Services Medicaid cap joint assets at $3,000 and combined income at $4,764 per month (or $2,382 per spouse).

                      We Can Help with Your Medicaid Eligibility & Asset Protection in Florida

                      Caregiver Support & Resources, LLC works with elder-law attorneys, and we can legally and ethically protect people’s assets to help them qualify for Medicaid and VA attendance. 

                      Medicaid, unlike Medicare, will cover most long-term care costs. Once we obtain Medicaid eligibility for an individual, if they remain within the Medicaid guidelines, they will have eligibility for the rest of their lives. Likewise for VA aid and attendance.

                      There’s no reason an elder or their spouse should live in poverty for transitioning to higher levels of care. Our clients, their families and future generations may still live in comfort and dignity.

                      (Editor’s Note: Caregiver Support and Resources, LLC is not a law office. Maureen Rulison is not an attorney. The information contained in this blog is not to be construed as legal counsel or advice or substituted as such in any U.S. state, territory, locale or foreign state where it can be accessed. Rather, this blog is meant only to educate elders, care partners and families as to legal processes around life care planning.)

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